Last night one of my new colleagues expressed surprise on Â mention of my children â she said she had no idea I had children. She did not mean it to be malicious but the fact I have children prove surprising to most folks. I think, to be brutally honest, most people do not expect disabled people to be sexual beings let alone have offspring.
And for disabled women it is doubly problematic. Consider the stereotype of being a woman âas a caregiver, as a sex object, mother, housekeeper â you get the picture? Many of those roles are not seen to be within the capacity of disabled women. All the media, films of disability and sexuality are from the perspective of disabled men where they have their needs fulfilled by non-disabled women. Examples, Me Before You (even if he did not think it was enough to keep him living), The Sessions, there not many based on the needs of disabled women (excluding Children of a Lesser God).
There is not much space afforded to disabled women on sexuality and how to factor in disability in the search for companionship, romance, relationships and sex. The narratives are missing. I was made aware how much so when I joined the group of women who went to the first workshop (there are a series of four workshops) lead by Sisters of Frida steering group members, Lani Parker and Dyi Huijg, on Dis/ability and Sexuality. This workshop was titled Crip Sex, Because We Want It Our Way
As disabled women we have a wide range of experiences, positive and negative, around disability, sex and sexuality. Disabled women are sexy, sexual, passionate, loving, caring, desirable, hot, beautiful, strong and much more! Our experiences of sexuality are also affected by different kinds of oppressions such as ableism, racism, sexism, heteronormativity, classism and age.
In this workshop we will explore what sex means for us as disabled women, non-normative sex, positive self-image, exploring sex alone and sex with others
I felt we really shared our experiences as disabled women intersected by faith, culture, and sexual orientation. We examined the differences with impairments, acquired and from a young age, we spoke about chronic illnesses, the barriers and effects of medication and age. Does sex alleviate pain, do we/should we have sex when we are in pain? We compared the attitudes of social workers, medical practitioners and partners â in and out of relationships, domestic abuse from families, society and community pressures.
I cannot wait for the next session. I hope more people will come to visit this wonderful space where we afford each other sisterhood and non-judgemental sharing.
Themes and dates of the workshops
Workshop 1: Crip Sex, Because We Want It Our Way (finished)
In this workshop we will explore what sex means for us as disabled women, non-normative sex, positive self-image, exploring sex alone and sex with others.
Date: Sat 30 July
Workshop 2: When It Doesnât Feel Good and It Isnât Right
In this workshop we will discuss negative experiences and difficulties we have around sex and sexuality, our boundaries, consent, privacy and ableism in relationships.
Date: Sat 27 Aug
Workshop 3: Disabled Desire: Sexy and Sensual Possibilities
In this workshop we will discuss positive experiences we have and want to have around sex and sexuality, pleasure, and what it means to desire and be desired.
Date: Sat 17 Sept
Workshop 4: Sex: Getting What You Want and Need
Here we will build on the other workshops, and discuss how to develop confidence and feel empowered to do and want sex differently, challenge internalised oppression and other obstacles, and talk about how to put our desires and needs into practice.
Date: Sat 22 Oct
this project was funded by
Eleanor Lisney is a founder member and coordinator of Sisters of Frida. She is an access advisor, an NUJ member on the New Media Industrial Council and the Equality Council. She is also on the British Council Disability Advisory Panel and the web team of the International Network of Women with Disabilities.
Svetlana went to speak about the CRPD Article 6 invited by the Polish Disability Forum and their partners on Sisters of Frida’s behalf on 13th July. This was part of the project âImplementation of the UN Convention on Rights of Disabled Persons â a common causeâ . This is co-funded from the EUâs European Social Fund.
Below is her presentation.
Disabled women are one of the most marginalised groups in the world.
According to UN they are
Both men and women with a limiting illness or disabilities are more likely to experience intimate partner violence.
There are many reasons for this appalling situation disabled women face. Those reasons are complex. Disabled women were largely overlooked by feminist movement and although disability rights movement was largely gender neutral, it until recently failed to address the specific needs of disabled women. Thatâs why the CRPD is so important for disabled women.
Before moving to talk about the convention, I want to tell you a couple of stories of disabled women.
Aisha is deaf. She lives with her husband and their 2 children. Her husband works and she depends on him financially. He also is the only adult person who helps her to be in touch with the hearing world. She also relies on the help from her children, but sometimes it is just not appropriate to ask them to interpret. Whenever she has medical appointments or just needs to go to her childrenâs school or shops her husband or children have to interpret for her. From very beginning of their marriage he was abusive to her. He often hit her and sometimes raped her. She tried to talk to her parents about this, but they told her to be kind to him, as in their view it is worse to be alone, than to be with him. Friends told her to call the police next time he beats her, but she is afraid. She knows there isnât anywhere she can go to, she depends on him totally. Police are not likely to believe her and what will happen to her if he leaves?
Mary has learning difficulties. She lives in a home with other people with learning difficulties. Mary fell in love, had sex and became pregnant. She was told about sexuality or given advice about contraception she did not realise what was happening to her. Her parents wanted her to have an abortion, but could not achieve this, as Mary did not agree. While she was pregnant nobody told her what would happen at birth or spoken to her about looking after her child. Mary had a very traumatic experience at birth and after that her daughter was removed.
The Convention recognises equality between women and men as one of its key principles. When it was developed, it has been decided to take a twin track approach, meaning that there is a specific article about disabled women along with specific mentions of gender in other articles. The convention seeks to address some of the specific areas where disabled women are most discriminated against.
Article 6, a specific article about disabled women recognises that they face multiple discrimination and requires states to take all appropriate measures to ensure disabled women can enjoy their human rights on the equal basis with others. Art. 6 is a cross cutting article. It therefore should be applied to all the rights in the convention.
Art 6 has 2 parts.
First it is about multiple discrimination disabled women face. Many of us have multiple identities and we are impacted by discrimination cumulatively as disabled women. Multiple discrimination is discrimination based on more than one status. Its effects can combine or grounds can interlink. Disabled womenâs situation is often influenced by the fact of both disability and gender. Other factors such as race and ethnicity or economic situation can also have a huge impact.
Multiple discrimination can happen in private and public sphere and the states have a duty to protect in both.
Discrimination disabled women face can take a form of direct discrimination, when disabled women are specifically excluded because of their gender and disability. Indirect discrimination â when policies seem neutral, but have disproportionate effect on disabled women. In the UK for example we argued that disabled women suffered the most from the recent austerity measures.
A denial of reasonable accommodation is also discriminatory. When disabled women for example cannot access breast cancer screening programmes because there is no equipment to accommodate their access needs it can be seen as a denial of reasonable adjustments.
It is important therefore to recognise that violence against disabled women, lack of access to health or maternity services, socio-economic situation of disabled women or lack of their participation and non-existence of their voices in political debate are all caused by multiple discrimination they face. It is also important to remember that disabled women are a very diverse group and there is a great inequality even within this group.
Do we hear the voices of women from ethnic minority backgrounds?
Do we hear the voices of women with learning difficulties?
Do we know the experiences of LGBT disabled women?
The second part of article 6 talks about the need to take all appropriate measures to secure development, advancement and empowerment of disabled women.
Development means giving women better chance in life by developing their skills and knowledge, improving education, economic situation, health, political participation etc. Advancement requires ensuring situation constantly improves.
Empowerment moves women from subjects of pity to right holders and decision makers. In order to be empowered women need to know about their rights and often need a chance to support each other and help each other have a voice. Empowerment is not only about taking part in political life, for many it is about standing up for themselves, being heard within their families, feeling confident and able to make choices. Empowerment is about feeling you are of an equal worth with others and you are making equal contribution in your own way.
In short stateâs obligations towards disabled women include the following:
Respect – not to take measures that undermine the development, advancement and empowerment of disabled women and girls. For example not to Introduce policies that may have a detrimental impact on disabled women or weaken protections disabled women already had.
Protect âensure private bodies do not infringe the rights
For example passing the laws that protect disabled women against violence.
Obligation to protect requires states to prevent, investigate, provide redress and protect the victims. In a context of violence, the states need to look at the positive measures they are taking to prevent it from happening. Are there effective ways for reporting it? Many of us need support to do this. Will those reports be investigated and will perpetrators be punished. Most importantly, will a disabled women who experienced violence get support to deal with it and move on. For many this support should include help to live independently in the community. Many of us are afraid to flee violent relationships, because we depend on the perpetrators not only financially, but also for support with our care needs.
Fulfil â To adopt measures needed to secure the development, advancement and empowerment. This requires specific resources and actions to advance the equality for disabled women.
It is really important to ensure there is enough information to assess the situation of disabled women. Thatâs why the collection of data is vital. The data that is collected about disabled people should be desegregated by gender. On the other hand, the data about women should include the data about disabled women specifically.
When CRPD was developed disabled people, including disabled women played a key part in the process. Nothing about us without us was truly acted upon. And CRPD recognises that disabled people, including disabled women should be involved in the process of implementation of the Convention and itâs monitoring.
It is important to remember that obligations in art 6 are immediately applicable, states cannot rely on progressive realisation.
Now I would like to focus on some specific areas of particular concern. Those are:
As I said at the beginning we are more likely to be victims of violence. Disabled women are likely to endure it for longer and have very little opportunities to escape. Violence happens because of dependency generally, but dependency of disabled women can be much greater. Perpetrator is often our carer, and sometimes the only carer. We feel it is much harder for us to make it alone. Who would look after us if we lose our main carer? Many of us are afraid to lose children. The feeling of being trapped is very strong and can be caused by many factors which link together.
We are often targeted because of stereotypes, limited mobility, social isolation, economic dependency, difficulties with communication ect.
Our abusers can be family members, support workers, staff at institutions. We often are made to feel grateful for all the help they give us, so we feel powerless to stand up to them and complain. General public largely is sorry for them for the hard life they have looking after a disabled person, do they care about us? probably not. We are often not believed. How those who look after us could abuse us? And they can always find justifications. Many parents for example who want their daughters sterilised justify this as a way to protect them.
Many of us donât even know that what we endure is not normal. We donât always know where to go for help and what to say to get help. Some of us need communication support to ask for help, and often rely on perpetrators or other family members to provide it.
Those who do report violence and try to flee often find themselves in a situation where there is nowhere to go. Many of us have to choose either getting some support in an abusive relationship or not getting support for our disability at all.
Sexuality, reproductive rights and motherhood
When I was young, I was often told that people like me should not have children. It is often assumed that disabled women either cannot or should not be mothers. They should not have sex and should not know about it.
Many of us never get sex education. We do not always get family planning advice. Sometimes our families or professionals looking after us get advice on our behalf and make us undergo invasive treatments, such as abortions or sterilisations. We often canât access reproductive health services or screening programmes for females.
Those of us who have children are constantly afraid to do something wrong. We cannot ask for help because our children could be taken away.
On one hand we are discriminated and marginalised like all other women are, but on the other, we also have to battle the assumptions that we cannot fulfil a female gender role.
When I apply for jobs I know the employers would firstly be reluctant to offer a job to me because I am disabled, but also because I AM A WOMAN.
Disability causes poverty and on the other hand poverty leads too much greater chance of disability.
Disabled women are less likely to be in work and if they are they earn less. We are disproportionately more likely to be a part of informal economy.
This is why we have to rely on services and the support from social security system. Disabled women are more likely to rely on services and would be disproportionately affected by austerity measures.
One way to ensure the specific needs of disabled women are met in the policymaking is to implement gender and disability mainstreaming. It is important to analyse the policies and assess their possible impact on disabled women. Disabled women should benefits from programmes targeted at women or at disabled people in general.
Disabled women are women and like all other women they are also protected by other international human rights instruments, CEDAW for example. Disabled women should enjoy all the rights guaranteed by CEDAW like all other women and as part of disability mainstreaming, disabled women should be considered when states monitor the implementation of CEDAW.
And finally, I would like to reiterate this point again. It is important to recognise that we all are different our different voices need to be heard and different experiences should be valued and taken into account.
Svetlana Kotova is one of the founding members of Sisters of Frida. She has conducted training on the CRPD with Disability Lib and is theÂ Policy and Campaigns Advisor at Sense. She is also the proud mother of a toddler daughter.
While we had our event Disabled Women Voices from the Frontline event today at Blackfriars Settlement, we found out that there was another meeting in Conway Hall –Â BREXIT, Racism and XenophobiaÂ Â to discuss the impact of the referendum vote on BAME communities across the UK organised by The Monitoring Group –Â some of us would have liked to be there.
We prepared our own response with a message and we had a panel discussion on the Brexit impact on disabled women which was passionate and we came to a conclusion of continuing the discussion.
Here is the message
We would like to send a message of solidarity to this meeting as we are holding our own event at Blackfriars Settlement Disabled Women Voices from the Frontline.
Sisters of Frida (SOF) is a disabled women’s collective. We are a collective for allÂ self-identified disabled women, and we are committed to an intersectional perspective on our day to day realities.
Sisters of Frida condemns the increase in racist attacks after the Referendum and is concerned how these attacks and Brexit affect disabled women, Â particularly disabled women of colour.
We are concerned about how dis/ableism, sexism, racism, homophobia, xenophobia and Islamophobia affect disabled women. As part of the disabled community, we have seen a rise in disability hate crime in recent years too.
Sisters of Frida is worried how disabled women of colour and European migrants have become pawns in the current political situation and are facing multiple discrimination and exclusion.
We are concerned about how Brexit and the conversations after Brexit are scapegoating thoseÂ reliant on the NHS and other health related and welfare support and benefits.
We are also concerned how disabled people are portrayed and treated. As Sisters of Frida, we are particularly concerned about how Brexit affects disabled women in the UK who are EU nationals. We are disquiet how this affects British and non-EU migrant disabled people in the UK, particularly those of people of colour, Muslim, LGBT and European communities. We are also worried by the impact on disabled people who rely on migrant workers to support their independent livingand how Brexit would exacerbate austerity cuts.
We hope your meeting will be fruitful. Let us unite in working together in moving forward towards a fair and just society, with an inclusive, supportive and safe environment in the future.
Unity is strength!
Some of the photos from today’s event Â – more photos and video to come later.
Venue CCUN Chapel 12.30-2pm (ground floor) Enter by the far door not the side with elevators. The shape of the room (chapel) might prove a challenge for a formal set up.
This panel will be discussing what would empowerment of disabled women mean locally, nationally and globally. We will try to include voices of disabled women (short video clips) from different parts of the world stating what it means to them if its possible with the venue. We will post the clips online for later viewing if not. We will use the Social Model of Disability; that is to say it is systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently), that disable us. We will also look at the different nuances of violence against disabled women, the different forms of abuse and how disabled women in particular are affected. How they survive inspite of having to face numerous challenges/barriers wherever they are in the world.
Alexia Manombe-Ncube (Naimbia)
Alexia is the Deputy Minister of Disability Affairs in the office of Vice President, Namibia. Recently appointed by President Hage Geingob to handle the affairs of physically challenged people, Manombe-Ncube has appealed to stakeholders to highlight the plight of the countryâs disabled people in order for her to realise her ministerial declaration of intent. She also urged stakeholders to apply all their energy towards the empowerment and development of the disabled and specifically to close the gender equality gap.
She champions those in the rural areas saying disabled are have less resources and left to crawl because they do not have wheelchairs like people in the cities. Alexia will be speaking on the status of disabled in Naimbia and her own empowerment as a minister.
Lucia Bellini (UK)
Lucia currently works as an advocate for disabled people who are victims of domestic violence. She is also a Disability Rights Advocate where she assists people to access care packages, to be re-housed, to apply for benefits and to appeal against decisions they are not happy with. She has a masters in Global Citizenship, Identity and Human Rights from the University of Nottingham. In 2008 to 2010, she worked with disabled peopleâs organisations in Guyana where she provided disability equality and project management training to many disabled people throughout the country. She is particularly passionate about ensuring disabled women feel empowered and equipped to make their own choices. Lucia will be speaking about disabled women caught up in domestic violence in the UK.
Michelle Baharier (UK)
Michelle (UK) is a visual artist and disabled activist with lived experience of mental-distress for over three decades. She set up and ran a disabled lead arts organisation changing the way disabled people were perceived in the main stream.
She has worked with women’s organisations and on a telephone help line for women affected by violence, and with women from a variety of cultures including the Poppy Project which supports women who have been trafficked to the UK, the Diane project for Iranian women who need a safe place to be due to violence. Michelle will speak about her work with mental health survivors and their struggle for empowerment.
Suzannah Phillips (USA)
Suzannah is the Legal Advisor for Women Enabled International. Her work focuses on legal advocacy with the United Nations and other international and regional forums to strengthen human rights standards on the rights of women and girls with disabilities. Prior to joining WEI, Suzannah was the International Women’s Human Rights Clinical Fellow at CUNY School of Law, Legal Adviser for International Advocacy at the Center for Reproductive Rights (CRR), and a Human Rights Fellow with VIVO POSITIVO in Santiago, Chile. She is currently a member of the International Human Rights Committee at the New York City Bar Association. Suzannah received her J.D. from Columbia Law School and her B.A. in Social Anthropology from Harvard University. Suzannah will be speaking on how different legal instruments can be used to support empowerment of disabled women especially with Women Enabled Internationalâs work.
Eleanor Lisney (UK)
Eleanor is born Malaysian Chinese of immigrant parents who moved to UK herself for graduate study. She is a founding member of Sisters of Frida will facilitate the meeting.
We will have time to discuss some action points that could lead us to unite across the world in solidarity and in sisterhood.
http://www.sisofrida.org/ email firstname.lastname@example.org @sisofrida
Sisters of Frida will be at the CSW60 – the sixtieth session of the Commission on the Status of Women.
See the NAWO’s Report (Pdf) on Sustainable Develpment Goals (SDGs) European Indicators (28th Jan 2016)
Time: 2:30 PM Venue: CCUN Boss
Sustainable Development Goals or Sidelining Disabled Girls?: Making SDGs Stand for All Women and Girls (SoF, Women Enabled Int)
3.00-Ââ4.30Â Â Â UKÂ Mission Redefining feminism: the voice of young womenÂ – SDGs and VAWG what is the legacy? (NAWO)
This is first posted on theÂ Â Sisters Uncut Â blog.
Disabled women are 2-3 times more likely to experience domestic violence, but have greater barriers to accessing services. Often they are not believed or their experiences as disabled women are not understood. Perpetrators exploit disabled women by financially abusing them, isolating them from friends and family, withholding vital care or medication, and usingâ theirâ impairments âto apply the form of ââabuse
Austerity has robbed disabled women of independâent livingâ in a number of ways.Â The closure of the independent living fund, the introduction of ESA and the inappropriate work capability assessment, the change to PIP andâ Motability (for adapted vehicles) as there is an arbitrary change to mobility eligibility.
This is a systematic erosion of disabled people’s rights. An erosion so grave the UN is investigating.
Women are told they âhave to use nappies inspite of not being incontinent. Never mind the indignity. Never mind the health risk from sores, a risk that is not needed. Children are removed from disabled mothers as social services deem them not to be capable of parenthood. Disabled âwâomen wait in fear of the arbitrary sanctions from job centre and DWP letters informing them they no longer meet criteria for benefits.
This all feeds into vulnerability, isolation and dependency onâ possiblyâ abusive partners.
The decimation of disabled people’s rights and independence, through the systematic removal of social security has had one particularly significant effect: disabled women are left at greater risk of domestic violence.
When it comes to state support for disabled women, social security is no ‘benefit’. In a world which denies disabled people access to education, employment, family life and public spaces this money is a small recognition of the barriers faced.
Disabled women experience a compound oppression. As at the same time their risk of violence increases, funding to domestic violenceâ aidâ services is falling. This is despite an evidence need for MORE funding to ensure they are accessible and responsive to all disabled women . We need more specialist services and accessible helplines and information.
Without this âsupportâ and funding, disabled women lose theirâ âindependentt livingâ, their social circles, âcivil rights, choice and control. Isolation, dependence and vulnerability are âexacerbatedâ by austerity.
Austerity sets up the conditions where disabled women are âmore than â2-3 timeâs likely to experience domestic violence.
A big thank you to Lisa-Marie Taylor, FIL’s organiser, for inviting us!
We did some publicity by having a stall and we ‘re grateful to Annabel, Zara, Jacqueline and Sophie for helping us with the stall!
(Click on photos to get a bigger photo)
Real Media came to do do a short video feature on it – many thanks!
Frances Ryan also wrote a piece for the Guardian on the event A Disabled Woman’s struggle is any woman’s struggle
Obi was kind enough to video the whole event – if you wish to follow it in its entirety
great additions from Nidhi Goyal and Asha Hans Part 1
with Q&A from audience
Asha Hans video
TRANSCRIPT Asha Hans (Word doc)
Nidhi Goyal’s video
TRANSCRIPT Nidhi Goyal (Word doc)
Frances Ryan’s video
TRANSCRIPT Frances RyanÂ (Word doc)
Becky Olaniyi s video
TRANSCRIPT Becky OlaniyiÂ (Word doc)
Rebecca Bunce’s video
TRANSCRIPT Rebecca Bunce (Word doc)
Kirsten Hearn’s video
TRANSCRIPT Kirsten Hearn (Word doc)
Thank you all for having taken part in the event!
While we were at the Screening AccSex event at Leeds University, Sarah Woodin presented the findings of their report Access to Specialised Victim Support Services for Women with Disabilities who have experienced Violence which included guidance from Ruth Bashall and Susie Balderston.
This research is investigating violence against disabled women and their access to specialised womenâs support services. Funded through the European Commissionâs Daphne III programme and with international leadership from the Ludwig Boltzmann Institute, the project is running from 2013 to 2015 in four countries:
There are several elements, which include:
187 disabled women from the four countries took part (106 women in focus groups and 81 women in individual interviews). They included women with mobility or sensory impairments, women with intellectual impairments, women with mental health conditions and women with multiple impairments. Specialised service providers assisting women who have experienced violence also took part in this study (there were in total 602 responses to an online survey and 54 individual interviews with representatives from services). However, the numbers are only provided here as an indication of the scale of the research. The focus was on exploring barriers and issues in depth rather than on recruiting statistically representative samples.
Disabled women experience a very wide range of types of violence. They report the same types of violence as non-disabled women, but also abuse that is specific to disabled people, and that takes place in a wider range of places and is enacted by more kinds of perpetrators. Domestic violence is substantial and highly damaging for disabled women, but violence also encompasses institutional violence from carers, where women live in residential homes or from assistants where they receive help to live in their own homes. âHateâ violence and crime was also described, where women are abused on the basis of who they are seen to be. Violence is often directed towards perceived areas of weakness, such as attacks that focus on womenâs impairments, often arising or increasing at the onset of impairment and at times when women need more help, such as during pregnancy and childbirth or if their residency status is uncertain. Although violence is most prevalent for young adult women, participants report experiencing violence at all stages of the life course and sometimes in many different settings.
A formidable array of barriers are identified by disabled women in relation to securing assistance and achieving a violence â free life. At a micro, individual level,Â Â the active isolation of women by perpetrators, combined with the inaccessibility of services and a lack of knowledge and capacity to help, all result in keeping disabled women away from support services. Macro level systemic barriers include the ways that funding and administrative regimes combine to make movement away from repeat violence situations very difficult. The project is highlighting the dynamics of this pressing social problem and setting out the steps that need to be taken to prevent and address this abuse. Examples of good practice and innovation in each of the countries are also being documented.
UK Reports and Working Papers
International Project Findings and Publications The main project website is maintained by Â the international project co-ordinator, the Ludwig Bolzmann Institute, Austria
The site has reports and other publications from all four counties, in a range of accessible formats.
It was a brilliant night – thank you all for coming – Becky Olaniyi,Ruth Bashall, Michelle Daley, Janet Price, Lani Parker and others.
this is the link to the video
Feminism, Disability and Activism
Welcome everybody to the Putney Debate. First a few things about housekeeping. The disabled toilet is down there at the end of the corridor and there are other toilets upstairs. We are going to be live streaming and recording for prosperity all the debates so when it comes to questions and comments, I will hand around a mic. If you come up just please be aware that you need to speak clearly and use the microphone. So, welcome everybody and Iâll hand over to Eleanor.
Thank you Julie. Let me explain a bit about the live streaming. Anybody who is online can be watching this and maybe contribute as well Inka? Iâve seen that.
Inka: Would you like that?
I donât know if anyone is watching. If anyone can put it on Twitter, Iâve put it on Facebook but I donât know if itâs on Twitter or not. So, that would be great.
First of all I have to thank Occupy London for suggesting that we did this. At first I thought what have we got to do with Occupy London but then we thought this is a really good platform to do something that has never been discussed before. And we came up with the title last Friday afternoon over cake and that is why I think everything was done in a bit of a rush and anybody who works with disabled people knows that when you try and organise anything you have to give a long time and so I apologise to Pauline and all the deaf friends who came. We tried so many interpreters and we just didnât manage. Well, we did manage to get one and we thought hallelujah but something personal happened and she couldnât stay.
Anyway, let me tell you something about Sisters of Frida which is the host I think you call it with Occupy London for this meeting. If you donât know yet, the title of this meeting is Disabled Womenâs Right to Occupy. When we were discussing this, Ruth and I, we thought that instead of having a panel of us talking and then questions and answers, we would do it in a form of interview and other people could interject and join in the conversation. Also, we did it this way because this is entirely new and we have not done this before. This is not just disabled people or Occupy London or other people or groups. This is a whole mixture so we will see what comes out of this little melting pot. I should start with a little bit about Sisters of Frida. I always forget to introduce and do the proper introductions.
Sisters of Frida was started about 2 years ago. We sat in a lobby in a hotel as we didnât have anywhere else to go and it seemed the right thing to do to have it over a cup of tea. There were 9 or 10 of us and we thought it was a really good idea. One of the people who was there was Martine Newel who was gutted that she canât come but she has a really bad cold and instead of sharing it with everyone here she thought she would just watch it on the live stream and share her thoughts later. Another one has gone off to Liverpool and others are in the rest of England and so cannot come and thatâs why we are really grateful to Occupy London and Inka for live streaming so that they can also join us.
Anyway, why Sisters of Frida? We are called Sisters of Frida and took a long time to decide that name because we didnât want it to be specifically labelled in a jam jar sort of thing, you know? We decided that our role model should be Frida Khalo because she was an artist and her creativity was born out of her impairment and her disability but she was also a very feisty women, was bisexual, she was an activist, she was a lover, she was a real lover of life. So anyway, thatâs how it all started. You can read it all on our website about what we do.
We are trying to focus on a few things and we are still coming up with what we are going to be and what we are going to do in the future but violence against women, the sort of gaps that disabled peoples organisations have not touched on. The sort of things that feminism in general have not touched on. Disabled women and feminism.
Let me start by introducing Becky who I met last week at Feminism in London and I had this thought and said that she would be a brilliant person to start the conversation this evening. I will do a bit of introduction. Beckyâs 18, she is doing her A Levels, sheâs amazing. She does swimming, tennis and reading and is studying English Literature, Psychology and Sociology and hoped to study psychology at university. Sheâs Nigerian, born in America and has used a wheelchair since she was a young child. Then her family moved back to London and she has lived here ever since. And, if this is right, she says this is the first time that she has done anything relating to disability.
Congratulations and arenât we lucky! Despite being in a wheelchair and having a visible disability this has a huge impact for pretty much her whole life. She says for her this is a testament to how much disability issues are ignored and go unnoticed and are not discussed even by people with disabilities. Sheâs becoming more aware of the power and inequality and how that affects her day to day activities since she was 16. OK, now I have a series of questions prepared and I think we will go from there if thatâs OK?
First of all is there anything else that you would like to introduce that I havenât already done?
I am not sure. This is so weird hearing my own voice! Well, I am Becky and Iâm 18. I was born with Cerebral Palsy and Epilepsy and the list goes on. But aside from that I have a lot of different interests and I try to not let my disability get in the way of my life. I just power on and try to be as normal as I can. And, yes, thatâs pretty much it.
I donât like labels and I think that most of us have multiple identities. For example I am a disabled Malaysian Chinese woman, British by marriage. Being a wheelchair user, impairment is pretty visible, and as a women of colour. So intersectionality is important to me.
What identity, if you can answer this, is the most important to you? You have said all that before or do they have equal impact on you?
Thatâs a difficult question to answer. I donât think there are separate identities. I think that everything that is a part of me becomes one identity. I think the idea of having separate identities is a bit weird because you are one person and all these things make you. So you are not just black or just gay or just disabled. You are your own person and you are made up of all these different aspects.
Yes, but I think then my question is how do you find that these different identities, for example, I know that my Chinese community donât really accept disability and I have problems there. Youâd be hard pushed to find many BAEM (Black and Asian Ethnic Minority) disabled peopleâs organisations. There is one called National Equality Council. So thatâs why the question but I think that what you have said is quite fair as I donât think I ever thought about separating the strands in my life.
In what you said earlier in your bio, you sort of said that from 16 you feel like you have been a sort of activist. Do you want to elaborate on what shaped you on that journey do you think?
I am not really sure I guess. I just started spending more and more time on the internet. Then from there I started learning more about activism and when I went into sixth form I kind of got my own identity and there were less rules and less restrictions. I sort of branched out and did my own study and reading.
And from there it really inspired me to do more and more and now I am here.
Great. I think I asked because one of the themes is activism and thatâs sort of part of Occupy London as well. Its great because one of the reasons I asked you is because itâs pretty important to Sisters of Frida how can we help young disabled women like yourself? So how we can help women like yourselves to show you the way or to learn with you etc. We were both at Feminism in London last week and we both remarked on the fact that there were not many visible disabled women there and I can see that Angela is here. She was at Feminism in London too. Thank you Angela for being here. We were both saying that feminists havenât really included disabled women or women of colour in their discussions. What would you have liked as sort of support from other feminists? You know, from your experiences there because we went to different sessions?
Well I kind of chaired a session at Feminism in London and one of the women there said something that really struck me. She was like, before I met you I never had any idea that there were black people with disabilities because you only see white people with disabilities. I was like, well thatâs an interesting sentiment, thank you. I would just like for a feminist to acknowledge that there are people with disabilities that are also women that are also feminists. We are not just there in our own little bubble […….feminism] because thatâs counterproductive.
I canât believe she said that! [laughs]
But that is great.
Sisters of Frida was set up because we felt disabled women were left out of the whole conversation of feminism. So how should you think, I mean this might be a tough question and might go on forever, but how do you think an intersectional network (an intersectional network that we have been discussing) would work? What support could it give you? What support would you like from it? Or what could you do with it?
I think to have an intersectional network you have to first acknowledge the fact that there are women that have disabilities are [……]also? human beings and that having a physical disability doesnât dull your intellect and even having a mental disability doesnât mean that you cant have your own opinions. And before intersectionality can happen, this has to happen. And I think an important thing for intersectionality is showing young women with disabilities that just because you have a disability it doesnât mean that you are a freak. I only have one friend my age who has a disability and she tends not to acknowledge it. Not that she is ashamed but she doesnât want it to be something that is shared with other people and I think that is a serious problem because if people donât want to be open with their disabilities, how can we meet people who have disabilities?
I think that is perfectly fair. When I was your age I was in total denial. I just thought that I need to work harder and get on and Iâll be OK.
So, the last question here before we go on to Ruth is (pause). Well I should say, we started with Becky because its seems good to start with someone who is just starting on her journey to intersectionality and feminism and disability activism. And then going to Ruth who has been there quite a long time. Been there, done that, got the t-shirt.
So this next question is a bit more sort of focussed on something else. Disabled women are said to be twice or even three times more likely to encounter domestic or sexual violence. And one young member of Sister of Frida said that she was doing workshops in Strasbourg with young disabled women and that some were not even aware that they had been inappropriately touched because of their impairment/disability.
How do we get awareness to disabled women so that they can first of all be aware to complain about it, where should they go and how do we even start because violence against women and domestic violence is very much in the news at the moment but I think disabled women donât seem to be mentioned.
At my sociology lessons at school we have been looking at gender and crime and we hear all these statistics about how one in six women experience domestic violence every year and one in ten women will experience it in her life. And a certain number of women of colour have experienced domestic violence but there is never anything about women with disabilities so it kind of comes across that women with disabilities are not able to be domestically abused or sexually abused and this is a total myth and I think that this needs to be dispelled so that you can teach people that what someone is doing to you is wrong and its not just something that you should expect just because you have a disability.
Fantastic. Thank you Becky.
Is there anything that you would like to ask? Or talk about anything I left out?
I would just like to say that this is the first time being in a room with so many disabled people and woohoo!
(Laughing and clapping)
I think before we go to questions we should ask Ruth the same questions.
This is an introduction as there may be some of you who do not know her. Ruth runs Stay Safe East, a disabled peopleâs organisation or DPO for short which supports victims and survivors of all forms of abuse including domestic and sexual abuse and hate crime. Theyâre unashamedly feminist in their approach and work to the social model and so work with any women or even men who are disabled even if they donât identify themselves as such. They have worked with over 200 clients since they set up 3 years ago so they have a lot of case work evidence to offer. A large part of the job is around policy and strategic work in London and National level and she has also been involved in European research. She found that the barriers faced by deaf and disabled are many and wide ranging. Different forms of domestic violence can [….. ] for disabled women. They believe that safeguarding systems at times actually increase the risk and at best does nothing. It makes her think of Sojourner Truth who said âAinât I a womanâ. Lack of accessible and appropriate support, services rampant with discrimination in the justice system and so on and so on. I was told to keep it short. Ruth, welcome. Would you like to introduce a bit more about yourself or have I missed out anything?
I suppose itâs partly about your question later about activism but I didnât land in this from nowhere. I have been a feminist all my life and disabled since my thirties. And was not one of the earliest women, I think women like Kirsten Hearn and Pat Rock who were involved in trying to make the feminist movement more inclusive I think deserve a bit of credit. I was a late comer to this but there has been a strong feminist strand of disabled women who have tried to bring the two together. But I think that there is a new generation, not just in age, but in chronology if you like, of disabled women who are starting to raise their heads above the parapet again and its fantastic to be here with Becky and also Eleanor who has been a strong part of creating Sisters of Frida. We can talk about activism later.
We havenât talked about you.
Which identity is the most important to you or do they have equal impact on you?
I think like Becky, to me Iâm me, Iâm Ruth. But you cant divide yourself up into a series of identities and of labels. I am a lesbian and a grandmother now. If you had asked me this 20/30 years ago I would have said that I am a lesbian mother probably before anything else. Iâm a disabled women, Iâm lots of things. Iâm a gardener, you know. Those labels are not the only thing but the important thing to me is to be recognised for the totality of who we are and not be asked to be just disabled. That was why I was quoting Sojourner Truth earlier. The whole idea that âas black women, aint I a women, as a disabled women aint I a women tooâ and that disabled women were seen as genderless and you even have so-called disabled toilets. I remember going to a disabled womenâs conference in Germany and there was a group of women who did a skit about this. They said that toilets have three genders; male, female and disabled. Of course, we didnât fit any of those but thatâs another story. But I think that whole issue about identity is a complex one. I came from a generation where we chose a identity very consciously not only as women but very often for many of us as lesbians. And you still find that people will talk about LGBT, they will talk about gay but somehow the word lesbian is far too sexual, far too direct, and far too obvious.
You know, I think that its complex and it depends on the context, but in the end I am me and those labels are only a small part of who I am. But I want to be recognised for who I am. I donât want to have to leave part of me on the doorstep and apologise for part of me and that includes having to apologise for my sexuality, for my life history and for being a women and being disabled etc. Thatâs the important thing that we donât have to apologise but that we are also welcomed and recognised and that the experience weâve got is recognised and taken account of in how anything is organised, done, thought about etc. And thatâs the problem. I think to me, intersectionality is a new word. I had to look it up in the dictionary. We talked about multiple oppression. But itâs something that is describing a reality that is more complex. And I think you know, to me I talk about inclusion really but in the end itâs the same thing. Itâs about recognising that our differences bring us together. I canât remember the quote from Audrey Lord but there is a wonderful quote about not being afraid. âItâs not our differences that divide us but the fear of our differencesâ I think is the quote. I think that says it all really.
If I may quickly add something to that. I was very honoured that I got to meet Rashida Manjoo who was the special reporter for sexual violence and she came to the UK and she mentioned that one of the problems is that there is gender neutrality.Â Â So, there is a problem with disabled peopleâs organisations as we talk about disabled people but we do not talk about disabled women. So thatâs that huge gap.
So, why do you call yourself an activist? I think you do call yourself an activist and what has shaped you in that journey?
I mean I would call myself a human rights activist. I think (pause). Itâs funny, I was thinking about this on the way here and I think the thing that shaped me was probably my mother who was a strong feminist, who was a communist. But also the experience of growing up as a foreigner not long after the war in France where I experienced a fair amount of xenophobia including being tied to the tree for burning Joan of Arc which was a strange thing but in those days the super nationalism of Europe unfortunately was starting to a take hold again. And, very early on being aware of anti Arab racism I think more than anything else. And of stuff that happened in the early 60s when I was still a child when a demonstration of Algerian migrants in France (it was at the time of the Algerian Move of Independence) were set upon by the Police and 200 people were murdered and thrown into the river in Paris and it still affects me. It was hushed up and my mother had a friend who was in journalism and I can remember them sitting around the table talking about this. And for me, as a child, that was an impression that really stayed in me and in my memory and it still does. And the injustice of the silence around that. And I think the silence more than anything else. The mass murder of a group of people who were simply fighting for their right to self dissemination.
I was of the generation of 1968 in France, so I dutifully went off and threw paving stones at Police Officers who retaliated by raping a friend of mine. And I think that was probably seeing the violence against women and I came to Britain in the early 70s when the Womenâs Movement was being born and found a movement that, I think in the early stages, was very local and very much turned to America and the States because that was the inspiration but gradually started to become more international.
For a while I was on Outright Womenâs Newspaper who were a socialist feminist womenâs publication at the very end of it. Itâs not my fault that it closed, but at the very end of it. So, I think a lot of the kind of perspective that I have was an internationalist one because of my experience and my background.
And I was involved in trying to set up a womenâs centre, lesbian mothers network, trying to fight for the right to keep our children because at the time if you said you were a lesbian and a mother that was something that (pause) the two words donât go together. And interestingly now I find myself in the same situation working with disabled women now where the two words donât go together where there is an assumption that if you are a disabled women you are an unfit mother. Hasnât changed that much. Itâs just the label that has changed.
I was very much involved in anti racist things and trying to stop people being deported and so on. And involved in community politics so I have always been a grass roots activist in my own neighbourhood in East London and itâs been about that. And gradually when I became disabled I got kind of dragooned into the Disability Movement by a couple of friends who basically said stop feeling sorry for yourself and get on with it, there is a demonstration to organise. I was used to organising demonstrations so I did and I havenât looked back.
So, I think it has always been from a human rights perspective and from an international point of view and I still keep links with people in other countries. I think thatâs very important in terms of understanding the experiences of disabled women for example. You know, where we are starting from is not the same in every country. Our experiences of impairment are different. And lots of other things really. And I suppose thatâs my background in activism.Â Â And itâs fantastic to see a new generation of feminism coming along who have got that international perspective.
Here maybe I should add that something that Sisters of Frida have been doing is getting involved with UN instruments like CEDAW which is the Convention on the Elimination of Discrimination against Women. Eleanor and I went to Geneva last year as we felt it was important to have a visible presence of disabled women and now we are also involved in the writing of the shadow report for the convention of rights for disabled people. And also we are very honoured that organisations for social justice have invited us to go along. Perhaps because there are not that many organisations of just disabled women.
So, when were talking we said that it would be good to have some kind of network set up from this. This would be the sort of nucleus to start off something perhaps. What would you like to grow from this? Or is that a difficult question?
I think it depends on the context and depends what you are doing.
I just want to go back to something which I forgot to mention and that is important. I was one of the founder members for the Campaign for Accessible Transport and it was the first, no second, direct action groups who campaigned around accessible transport and I think that this kind of overlaps with your question as it is about how we do stuff. I learnt an enormous amount from doing that because it was about trying to work together to do direct action which is pretty scary particularly if you have never done it before. I hadnât done it as a disabled woman. And trying to do it in a way that is inclusive and we did manage to develop something which gave people a choice about how they got involved, what they did, whether they chained themselves to a bus, whether they got themselves arrested. Itâs not rocket science and itâs probably not great news to those who are now involved in direct action. But it was quite ground breaking and it had an impact way beyond its number of people. You know, there were 100 people on the mailing list but you know you can block the whole on central London with 50 people particularly if they are wheelchair users and at the time the police didnât know how to arrest us. There werenât any accessible police stations in Central London. Iâm afraid there are now so it doesnât work anymore! (laughs). Theyâre a lot better at it now. I must admit I have been an advisor to the Metropolitan Police. But I didnât tell them how to do some of it I must say. I kept some of it quiet.
But, I must say I think in terms of networking the important thing is about how it has changed now. There is a lot of stuff online; you know Iâm useless at Facebook. I think that the kind of exchange of ideas, impressions, thoughts, trying to educate each other and trying to understand how we develop inclusive networks is really important. There is the capacity to do that because we can do a lot of it online and you donât have to be in the same room. And you can cool down before you have a go at someone. All those feminist conferences where we kind of threw things at each other (laughs). I think itâs really nice and useful to have a bit of time to think.
So for me personally, because I work on violence against women (and disabled men occasionally), itâs having a network which is about reinforcing the feminism of it. The gender based stuff. The inclusive stuff. The intersectionality which actually allows me to put things in context.
On a personal level the research Iâm involved with on European research on violence against disabled women, the fact of going to Vienna last summer and actually being with a bunch of feminists, some disabled and some not, who were working on this issue and thinking about the issues in great detail. Some were activists and some of the women were doing some extraordinary daring stuff around sexuality in places like Austria. A country where thousands and thousands of disabled people are still locked up in institutions. Theyâre still building institutions. And she is going into institutions to talk about sexuality with very little support. Just being able to be inspired by what other people are doing and also to learn from that to energise each other I think is really important. And that includes, you know, I think there is a need for a network of disabled women but there is a need for a wider debate and a wider exchange of experience and expertise around activism. It is really needed but in order to do that we need the mainstream events to be inclusive. You know, I am partially deaf, if at a big event I donât have subtitles then I may as well not be there. I would be in the same situation as Pauline. Those sorts of things are really important and we have to think about that before we even get together. But from that point of view the internet is really useful. Anyway I will shut up now.
I think here there may be a few of us that are involved with DPAG, well some of us also do the direct actions which are a little bit more hairy these days as Occupy London have also been involved I think in live streaming and supporting and I agree with you that we work with unions and with all sorts of mainstream.Â Â And I think that is exciting and I think that like tonight we said that itâs for men and women, disabled and non-disabled as we all have to work together and itâs a battle because fighting for access and you think that should know about it and I am sure you know, for example Pauline and her friends said that I should know about and I do know about it but sometimes it is a bit difficult to all get organised. I mean we were supposed to be upstairs with a platform lift and I was having nightmares about the platform lift breaking down and all of us stranded upstairs with nowhere to go (laughs). And you know, that sort of thing is always a problem.
Now, on the schedule there should be a break but Iâm thinking that maybe itâs too soon for a break? And I was wondering if people here would like to say something so that we can think about it over the break and then come back and talk a bit more about it. Maybe I should introduce Janet Price who has come all the way from Liverpool (pause background talking).
I was thinking that we should have some questions and then have a break and come back and then… What would you like to do? Oh, alright then, shall we have a break? Iâm afraid we did not manage to set tea up but there is a cafe that I think is still open (background talking)…. Euston station is just across the street. Is 15 minutes enough? Or 20? OK. But there might be queues for the loos too. I donât know. I know Euston station. I even slept in it once when I was made homeless (laughs).
So, OK. I think we shall have our break then.
Itâs not so much a question and answer thing here. I think we wanted it to open up more into a conversation and there are people here that would be great if they are willing to contribute as I know they have got great stories and etc.
One of the people that I invited and was very happy when she said that she would come down from Liverpool, all the way from Liverpool, is Janet Price and also [Angrid]. And I donât know if you guys know about the DaDaFest but she is part of that as well and has done some great work about disability and sexuality )and if you want to continue about what we have been talking about or bring in your own experiences or thoughts that would be great Janet.
Am I alright here or would it be better if I held it (the mic)? Iâll just go a bit further back.
Well, thanks so much. I have been eyeing Sisters of Frida online for quite a while thinking feminists, disabled, feminists, let me at them (laughs). So it is really lovely to be here. I became disabled about 25 years ago now and I have been an active political feminist lesbian and for me to suddenly feel like I had lost a whole community which is what happened so many people disappeared from my life at that time and I had also moved cities and was hunting around for things to do and actually what I fell across was not other disabled feminists but disabled representation and the politics behind it and that was when i got involved with DaDaFest. One of the things that has struck me more and more as I have been involved with DaDaFest (disability and deaf arts festival)( currently about to launch our festival for this year in 4 days time check out online www.dadafest.co.uk and we are streaming some stuff but there is going to be a lot of really good stuff online. So anyway, thatâs the politics and the advertising). What it has made me realise that being part of an organisation where access is key and representation of disabled and deaf peopleâs lives as they choose to represent them whether itâs through plays or through poetry or through films or through statues and we are very clear that we are not trying through DaDaFest, this isnât about community based art which has its place and is really important and we support that too but this is about quality representation that tells people about how we want to be seen as disabled people and so itâs really exciting work and its developing more and more all the time. I know you got to see a lot during the Paralympics down in London and there was a lot of really good work going on and being shown here at that time. Well we get a big festival of it every 2 years in Liverpool and it is wonderful and itâs going national and we are now going global so we have ambitions.
And one of the things, that international ambition, has I think been really close to my heart because a bit like Ruth I have always been an internationalist. I mean, politics taught me that I was so ineffably middle class and able and it was about recognising the privilege of that and about the struggles of other people and the way that I could be committed to working alongside them and the battles that they were fighting.
And one of the real joys of my life is that I have been able to be very close to and work alongside disabled feminists in India. And non disabled feminists and watch the interactions and the issues that they are fighting together and how the work that has gone on between disabled and non disabled feminists in India has been something that has taught me a lot about the way that movements can start to come together and share issues. There is no sense in which they would say itâs perfect but there have been a lot of lessons that they have tried to move and work together. Now the organisation that I have had the luck to work a lot with is a feminist, human rights and sexual rights organisation called CREA and they do a lot of training of young activists. They do a lot of political representation and challenging the ways of the forms of political representation around sexuality. They have also started thinking increasingly a lot around disability and I have been working with them for 10/12 years now both doing trainings and supporting the training of other young Indian activists so that they can go out and do similar sorts of work.
Itâs increasingly a very intersectional organisation and one of their greatest events that they ever held was a violence against women conference. And they held it up in Nepal and they held it in Nepal because it was a South Asian conference and they wanted somewhere that would have access for women using wheelchairs and none of the big hotels had more than one room so in Nepal they found a hotel that was just in the process of being built so Geeta, who heads up CREA, and is a force to be reckoned with, went up to Nepal and did this deal with them that they would bring the conference there if they built another 4 rooms that had wheelchair access and so they did. So you suddenly got this really good accessible hotel in Nepal and its about using those moments and that meeting had disabled women, lesbians, trans women, women living with HIV and sex workers. There were conversations going on that were quite extraordinary. You know, disabled women for whom it was their first time that they had been able to fly somewhere sitting next to a sex worker. And the sex worker saying âI didnât know that disabled women had sexâ and you know, people saying âIâve never sat next to a sex worker, whatâs life like for you?!â And so conversations happening that just donât happen in other places and bringing together groups of people for whom the experience of violence was a common one and they had backed the conference up with some serious research with these groups beforehand so that there was a lot of participatory research that fed into it and then there was the actual experience of bringing together people and letting them have those exchanges with each other and to share those moments and really talk to each other.
And it seems to me that there is an ambition there that I think we need to claim and to really look at what is being done and the types of things that can be done if we really put some energy, some power and some thought. Just the energies behind all the movements that are here this evening. You know, all sorts of magical things can come out of it.
And just looking at the sorts of things that have emerged over the years from CREA trainings with activists around disability. A woman who was a feminist who did a lot of work around training, around sexual and reproductive rights and anti violence work, she had some contact with a group of deaf women. She went in and shared with them all of her knowledge that she had gained from working in feminism and that group of deaf women taught her an awful lot about what being a deaf woman facing violence was like. But she also learnt a lot about she needed to change her forms of presentation so that they were more accessible to a non hearing audience for example, the sort of things that she needed to be aware of. And, that you know, that we need to be aware of in an audience like this because itâs not just simply the women who are deaf and use sign. Itâs the women who use hearing aids or the women whose hearing is dropping. You know, there is a whole series of protocols that we need to get our heads around. I think I have been trained by the best in the business because DaDaFest are just so on the ball about it. Itâs crucial and I think that we have to be able to admit our ignorance and learn about what we need to do about access because all of us are still doing it so badly. And this isnât getting at you Eleanor. Itâs the problems of people not recognising the money that we need to do this properly, and all of the things that flow from there. So, yes, just to finish the story about the group deaf women. They have now been doing trainings around violence against deaf women which is of horrendous proportions as I think it is around most of the world including this country. But they have gone out across through India and you meet them and they are so delighted as they say they are being invited not only to North India and South India and a group from Pakistan wrote to them the other day and there is a group in Nepal that want them to go and visit. Those sorts of South Asian links that have built up and are very strong which means that they can now network much more broadly than they ever thought would be possible for them and they can do it in a way that fits with their sense of themselves as deaf women and increasingly as deaf feminist women. So thatâs just one of many examples I could share with you. And I think that what has been exciting is that a group who have a real influence on training activists and really sharing skills with them have taken disability on as a serious part of how they function as an organisation. So that spreads out and begins to have an impact on all the organisations that they are working with which now involves a lot of the young activists working across India.
Thank you that was brilliant.
One of the things I have been meaning to talk about is that I started saying how Sisters of Frida was started but I didnât actually say that it really started when the Million Women Rise invited me to go and speak at their march and me and Michelle Daley we spoke to 6,000 people at Trafalgar Square about violence against disabled women and from there, for me, I discovered that there is that gap. Following that a couple of weeks ago Michelle and I went to a premier of a film called Margarita with a Straw and that brings it back to India because I was blown away by that film and the sort of the brave intentions of Shonali Bose who was the editor and even more wonderful it was based on the life of somebody that both of us knew, MaliniÂ Chib, who didnât come tonight (she was invited).
Michelle, do you want to come in as people have heard my voice and you are a very good speaker?
You carry on.
Very quickly about this film. It is truly international, intersectional. It was about a young girl who had cerebral palsy in India and she got a scholarship or her parents sent her off to New York to study because the access in Mumbai wasnât so good for colleges and there she sort of went into a self exploration, self discovery of sexuality. She discovered that she was bisexual; she met a blind girl at a protest and got into a whole load of things you know. It is wonderful to go into a film about disability and sexuality and have the words âfuck the policeâ in one of the scenes. It talked about the relationship with her mother and her parents and its the whole kind of politics, the sexuality, the relationships of being disabled and being a woman who is full of curiosity. It was a great, great film. Michelle, do come in….
I just want say that I was really excited when Eleanor told me that we have Becky coming to speak. She was like âwow, we have a young woman , sheâs articulate, she knows her stuffâ and I said âalright, alright youâve sold enoughâ! But when I met Becky I thought you know what she is good. This is exciting as we have some fresh blood coming through. And I think that having Becky on stage is fantastic as we do need more new blood as its the young generation that we need to be working on to come through the doors and give new ideas because your experiences are so different from our experiences. You have been mainstreamed and the fact that you have said that this is the first time you have been in a room with disabled people says a lot.
My experience was that I was running away from disabled people when I was 18 because my experience was segregated in a special school and I think that there is a lot we can learn and I think that we need to make sure we tie Becky now in a different way. There is a lot that we can learn from the new generation of young people and Beckyâs experience doesnât really reflect every disabled people out there as many young disabled people donât have the opportunity to go to a mainstream school. To have this experience, that people like Ruth who have campaigned long and hard before myself, for disabled people to have what Becky wants. Becky is the dream that we wanted when we think about young peopleâs experiences. What we might not of had the opportunity to achieve what Becky wanted but the fact that we can see the fruit of it is fantastic. What we want to do really is to nurture what Becky has so that she can make it better for the generation after her. And I think there is so much that we need to be able to find a way of working with people like Becky and other young people to say how do we bring the new blood in? How do we work the new blood because their experiences, and we have to be realistic, are different to our experiences? When we were growing up I thought to myself there was no such thing as accessible toilets. You had to plan your day. When you left your home, whether you drank, what time you drank as there was no such thing as this. There was no such thing as accessible buses, dropped curbs. There was a lot more logistics on how you planned you day just to do day to day things. For Becky she wonât understand that. If she wants to get on a bus she just gets on a bus. But that wasnât a reality for many disabled people. I know I keep saying that I want to see Becky at more things and I think we can learn from people like Becky.
Another thing that is important, and Eleanor I think you touched on it, is that we have social media. This is a great way to reach people who have not been here today and I think we are talking about domestic violence against disabled people and I think that there are so many voices that couldnât come here that are being abused and they are being abused for a number of different reasons and they may not know about the supports that are out there. People who are refugees who are fleeing violence from their countries and even people who donât have status in this country. Having to live in certain conditions. I was talking to Lani earlier about how we reach the voices that may not even know about our groups? It is important that we find ways and using certain technology, saying technology not everyone has online access. People who are living underground in different ways. For me itâs how do we reach them? Not everybody has the opportunities that we have. People could define us as privileged disabled people.Â Â I wouldnât define myself as privileged but in many ways we could be for people who canât access what we have access to. I think that this has opened a discussion and I think that it is great that we are live streaming so that someone can record it and send it off to other people to show there are groups of disabled people out there. Also, something beautiful about today is that we have different faces in the room, different colours in the room. When I started out many years back it was often âwe need a black person at the tableâ and that used to really annoy me and I would say Iâm not coming, why should I? The fact that I had been invited because I was a black disabled woman…hell, no. You invite me because I am who I am. WE need to think about how we structure certain things when we speak to people as I know for a fact that someone like Becky who is young is not going to be having âcome to the room because we need young black disabled people around the table.â Itâs not right to invite people in those ways. So there are lots of things to think about the way we do things and still I get invited âcan you come to an event because we donât have any representation from certain groups?â Yes we want to have diversity but donât invite me just like that. We should be thinking about it in different ways.
OK, I think I am rambling. But I think that this is a great platform to get going. Thank you for organising it.
I think that one of the things we got to remember, and I think in termsÂ of activists, we were just talking about the independent living allowanceÂ being abolished, thatâs probably going to finish off this generation ofÂ activists. It has funded PAÂ support for the entire disability movement.
There are young disabled people now that canât leave home, who canât
get involved in stuff because they get only 10 hours per week support.
They canât get out of their front their doors, physically they donât get
access, simply because everything is cut back. I think that if you are anÂ activist, fighting for our basic rights to services, itâs not sexy, itâs notÂ something that politicians bother a pee about because the disabled voteÂ is not a collective vote that people have an awareness of, itâs invisible,Â itâs what happens to people when they are in their own homes,Â particularly if they canât get out. But actually this is a key human rightsÂ issue. People I work with are fighting to get basic support for someoneÂ who has survived domestic violence, who survived raping institutions,Â who is traumatised and is still being told they donât deserve â and thisÂ word deserve keeps coming back – basic support so that they can get outÂ of their beds, that is basic. And itâs not out on the street, because theyÂ canât get out of bed to go on the street and we need to fight for that asÂ well. We want to see a new generation of young disabled people, but weÂ need to fight for their right to be there. Sorry to put a pessimistic angleÂ on it, but I think itâs really important.
Having said that, there is a new generation of young disabled women
out there whose awareness of themselves as young women is really
strong.Â And at that point Iâll stop talking about Becky and hand her theÂ microphone.
I think itâs really exciting being considered to be part of the new
generation. I never considered myself like that, I always think of myselfÂ as an individual. I would like to say thank you to women like Ruth,Â because it never occurred to me that there were disabled women beforeÂ me that didnât have the opportunity to go to main stream school. ItâsÂ really important all the work that you have done, if you hadnât existed,Â I wouldnât be here. People like you need to be acknowledged, even youÂ kind of downplay your hard work what you have done, but I think youÂ have done a lot for the disability movement. And I would like to meet aÂ lot more women like you because you donât get a lot of attention.
Think also of other people who have been instrumental for getting
young disabled people into main street education, that has not been my
area. That has been so important in terms of inclusion in disabled and
non disabled people growing up together, but also in terms of disabledÂ people getting a decent education. The quality of education in specialÂ schools ainât what it should be, letâs put it that way. And a segregatedÂ society can never be an equal one.
We are part of a movement, itâs not over yet. I was interested to hear
what you were saying about India. Thereâs a sense that the second waveÂ of feminism kind of died back in the more wealthy countries andÂ actually women in India and in Latin America have taken up the
mantle and that has continued, and in terms of disabled women that hasÂ been the same. Maybe it has come back to us full circle. I would like toÂ get into contact with that group, I would be really interested in whatÂ they are doing.
Weâve been talking about the next thing we are doing to do, with SistersÂ of Frida, is screening a documentary of 4 disabled women who areÂ talking about their sexuality, weâre hoping to organize that event, but IÂ am still looking for the time to write the funding for that. Back toÂ Michelle..
This echoes what Ruth said, I think itâs really important, as long as we
have segregated services, we are never going to have inclusion. We haveÂ to continue the struggle and fight for disabled people to recognize thatÂ young people do need to be aware what segregation really means. TheÂ moment you have a job you tend to forget that you have to fight for ourÂ freedom. You know, because we have a book âŚ.. accessible âŚâŚ.
It doesnât mean we have achieved our freedom, because there can only
be one wheelchair user on the bus. We do really need to take people
back to the basics, to understand look we havenât achieved full equalityÂ yet.
And also, and I am paraphrasing you Becky, questions about which
identity is important to you, Iâm so glad that Becky said, well, they are
all important to me. I am who I am, that is all important. Thatâs
fantastic and the moment we start compartmentalise different bits of
ourselves, thatâs wrong in it self. We need to be recognized for who we
are. This is just a platform, we need to keep going.
To continue from what Ruth said this is the beginning of something
great, letâs hope that it starts tonight. Janet, did you want to come
Are there any questions on the floor?
Man in audience
You spoke about the million women march in India, we are very
interested in that in Occupy London, it was great to hear that you
actually went there and met some of these amazing women. Itâs
interesting that it is women, Julie, you would know more about that.
Women now make up 70% of farmers, that also means that they are
more liable to have accidents and incur harm or injury. But they are
supplying the world with food we are eating in London here today
which is very unacknowledged. But as I said, it was wonderful to hear
that reference, I wasnât aware that any people from our world, the first
world, the western world, attending, so Iâld like to hear more about
Woman in audience
Can I just say one comment for OTâs. Recently I was teaching on a
course for Occupational Therapists. At the end I said to them, our
identity is more than just our disability, itâs getting people to see us
beyond our disability, see us as we say: we are women, part of a globalÂ citizenship. We are much morethan our diability. We have to keepÂ reminding them our disability is not our identity, itâs just part of whatÂ we are.
Man in audience
I was given a diagnosis by a doctor, another doctor came along and
said, the diagnosis was probably wrong. But, you know something,
everybody is disabled â Iâm using that word very loosely – if they think
they are perfect. The world is disabled by not being sensitive about
other people in the world. My problem is your problem, everybodyâs
problem should be everybodyâs problem.
On identity. Nobody here can know their identity until the world
understands its identity and the worlds identity needs to incorporate theÂ potential identity of every creature. And everything that happens on theÂ planet. We have a big problem about identity, the world actually doesÂ not know what it is. The politicians who rule this world like gods withÂ tridents and blazing with fire, they do not understand their ownÂ identity, they do not understand the functionality of the world, what theÂ world should be about. Everyone can enable the world to discover itsÂ true identity, by empathy, by caring in a really authentic way. Sorry if IÂ went on a bit too long, it is about passion and passionate words.
Thanks for that. Thereâs a lot of problems around the word disabled
and about the concept of disability. I think itâs a complex issue and I
think everyday language uses the word disabled as a negative thing,
crippled, blind to the truth, deaf to reality, all that kind of stuff. Iâm
not going to give you an advanced course in disability and equality andÂ the social model. To me being disabled is about your pride, itâs notÂ something to be ashamed of, that is not to say that the reality of ourÂ impairment which is about our conditions, is not sometimes difficult.
But itâs not the only thing about me, I can peel the carrots, itâs not the
main thing. But who I am, part of my identity of being a disabled
woman, is part of who I am, not having to apologise for being a disabledÂ woman to me is so crucial to our identity as a disabled women, notÂ seeing the fact that our bodies, our minds, our ways of seeing the worldÂ happen to be are different than other peoples. And that is not aÂ problem, and I think we were trying to get at that, its absolutely crucialÂ to our sense of pride, being able to live our lives as disabled women, theÂ fact that we might have to do things differently, that we pick up ourÂ dinner with our feet not our hands, we might happen not walk butÂ wheel, the fact that being blind is not a loss but who you are, as long asÂ we perceive disability as less than, something that is a loss, that is aÂ shame, itâs so sad. âIsnât it wonderful that you speak out â, because youÂ are a disabled woman
Yes, on one level itâs wonderful because we face so many barriers, thatÂ we are able to speak out, on another level, its just life. We are what weÂ are and in fact we are very proud of being a disabled woman. ThatÂ identity is something to be claimed, so many of us are actually ashamedÂ of who we are and we feel we have to apologise for ourselves. As aÂ movement if we can create a space where disabled people, women inÂ particular, can be themselves, that does involve doing practical things,Â but also talking about ways of thinking, doing and knowing thatÂ together we are a heck of a lot stronger.
We talk about disabilities not just our identities. This may be the
appropriate place to say that our wonderful friend Kirsten canât be
here, because she is, what do we call it, she is celebrating her, what do
you call it?? I donât know what the word is, paganism? O yes, she is a
witch! (cheers from the audience) Doing the rights, whatever you do as
a witch,âŚ thatâs what I want to end on, we donât have one identity,
sometimes a thing can be more important than just being disabled
women, we have other roles to play.
Thanks you so much for coming, and for the providing of the life
stream and thank you Occupy London for providing the space and theÂ time. Disabled womenâs right to Occupy!
Please put your name down so we can let you know what we are doing
(with help from Lani Parker and her PA – many many thanks, to Frieda Van de Poll too)